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lookinup55
@lookinup55

Posts: 7
Joined: Dec 18, 2016

Familial hypercholesterolemia

Posted by @lookinup55, Dec 18, 2016

Hello everyone –

Im a new member and would like some input from the group. I am nearly 55 yrs old but have had terrible cholesterol problems my whole life. When I was in my late teens, my trigs were over 1200 (yes, 1200 – that is not a misprint). As I have aged they have dropped but still range between 600 and 800. I am self employed and most of the time I have not had medical insurance so my medical care has been sporadic at best. Each time is see a new doctor and they do my blood work, they freak out and want put me on all these medications. I have NOT been under medication for this my whole life, and 5 yrs ago I had full cardiac stress test done at the hospital done as part of a full physical including COPD screening etc. The stress came back showing absolutely no signs whatsoever of coronary artery disease or any cardiac abnormalities at all . ( I think I still have a copy of the test somewhere). My blood pressure is 130/70 and my resting heart rate is 63 beats per minute. I work out 6 days a week. If this trig and cholesterol problem is so serious, wouldn’t it show up in these test? Even this new Dr I saw seemed a bit perplexed that my blood pressure was normal and my hear rate so low.

thanks

REPLY

Hello @lookinup55! Welcome to Mayo Clinic connect!

I’m so glad you have posted this discussion on familial hypercholesterolemia. Every new discussion posted helps others who may be cautious about reaching out to an online community realize it is a very safe place and there is a great deal of community support offered here.

Here you will be connected with other members that have experienced similar diagnoses or may be a care taker for someone in a similar situation.
I am going to connect you with @susanjomu and @johnwburns . Both active members in the Heart and Blood Health group.

I hope that reaching out to the community will help find answers and support you need.

I know that you mention not wanting to be medicated. Have you researched natural remedies? Is that something you would explore?

Hi Jamie –

Just wanted to thank you for replying but also let you know that neither of the people you connected me with have reached out to me. Im not opposed to natural treatments but am just confused as to they they are so alarmed when my heart seems to be very healthy. I’ve increased my cardio workout to 45 minutes from 30 minutes 3 days per week (do strength training on alternate days and take one day off with no workout at all) and as of today my resting heart rate is 60 bpm and my blood pressure 123 over 78.My mom has the same problem and is 89 yrs old.

@lookinup55

Hi Jamie –

Just wanted to thank you for replying but also let you know that neither of the people you connected me with have reached out to me. Im not opposed to natural treatments but am just confused as to they they are so alarmed when my heart seems to be very healthy. I’ve increased my cardio workout to 45 minutes from 30 minutes 3 days per week (do strength training on alternate days and take one day off with no workout at all) and as of today my resting heart rate is 60 bpm and my blood pressure 123 over 78.My mom has the same problem and is 89 yrs old.

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I mean, I ve had this problem my entire life – it has not been treated at all – and I would think after 55 yrs if there was going to be a problem it would have already happened.

Hi Lookinup55,
It sure seems that, despite the familial hypercholesterolemia, your family has been blessed with fitness and longevity.

You may be interested in reading or joining these discussions:
– Want to control my cholesterol and triglycerides with food http://mayocl.in/2bfEmXR
– Supplements vs statins – which is more effective? http://mayocl.in/2bGBuR6

I think @predictable @thankful @johnbishop @ihatediabetes @pale @rosemarya and @hopeful33250 might have something to add to this discussion.

@colleenyoung

Hi Lookinup55,
It sure seems that, despite the familial hypercholesterolemia, your family has been blessed with fitness and longevity.

You may be interested in reading or joining these discussions:
– Want to control my cholesterol and triglycerides with food http://mayocl.in/2bfEmXR
– Supplements vs statins – which is more effective? http://mayocl.in/2bGBuR6

I think @predictable @thankful @johnbishop @ihatediabetes @pale @rosemarya and @hopeful33250 might have something to add to this discussion.

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thanks Colleen – I will look over those links

@colleenyoung

Hi Lookinup55,
It sure seems that, despite the familial hypercholesterolemia, your family has been blessed with fitness and longevity.

You may be interested in reading or joining these discussions:
– Want to control my cholesterol and triglycerides with food http://mayocl.in/2bfEmXR
– Supplements vs statins – which is more effective? http://mayocl.in/2bGBuR6

I think @predictable @thankful @johnbishop @ihatediabetes @pale @rosemarya and @hopeful33250 might have something to add to this discussion.

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Hi @lookinup55. I have a few observations for you to consider as questions to raise with your primary physician and one or two others, because your situation calls out for a second (or maybe also third) opinion — not because you are in any immediate danger, but because of your unusual familial situation.

First, you will get a lot of fundamental information from this web page: http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/art-20048186.

Second, you suggest that your high triglyceride levels might result from an inherited condition, which could escape the attention of your medical team or might be unusually difficult to identify without genetic testing (now more readily available than ever).

Triglycerides are different from cholesterols, so studying up on the latter may not give you the full picture. For example, high triglycerides could eventually cause life-threatening inflammation of the pancreas, which might show up in lab tests for diabetes.

The article on the Mayo Clinic web site provides more complete information on the possible concerns: “Sometimes high triglycerides are a sign of poorly controlled type 2 diabetes, low levels of thyroid hormones (hypothyroidism), liver or kidney disease, or rare genetic conditions that affect how your body converts fat to energy. High triglycerides could also be a side effect of taking medications such as beta blockers, birth control pills, diuretics or steroids.”

The Mayo article also has come crucial recommendations:
– Lose weight.
– Cut back on calories.
– Avoid sugary and refined foods.
– Choose healthier fats from plants — olive, peanut, and canola oils.
– Substitute fish high in omega-3 fatty acids for red meat.
– Limit how much alcohol you drink.
– Exercise regularly.

Notice how Mayo’s suggestions are just plain sound practices for everybody, giving you strong assurance that your situation is not now critical and probably is fixable with ordinary lifestyle changes.

Pay special attention, however, to the Mayo reservations about resorting to medication(s). These alerts lay out a set of additional — and essential — questions that your medical team should be asked and expected to answer to your satisfaction. If that happens, I’ll bet you’ll sleep better in the future!

thanks Predictable – I will look over that info. As far as the other concerns you mentioned, the Dr said my liver functions were normal, mentioned nothing about my pancreas, and Im not diabetic – either type 1 or type 2

@lookinup55

thanks Predictable – I will look over that info. As far as the other concerns you mentioned, the Dr said my liver functions were normal, mentioned nothing about my pancreas, and Im not diabetic – either type 1 or type 2

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Good to hear, @lookinup55. The range of possible symptoms is simply important to 1) keep in mind in the weeks and months ahead and 2) pinpoint questions to repeat to your medical team whenever you see them for an examination or for treatment of any symptoms. And given your unusual situation, it might be enlightening to ask another doctor or two for their views.

I come to this with a genetic variant in my kidneys, causing high blood pressure and low potassium symptoms. I took me 15 years to find a doctor driven by a commitment to finding basic causes, not simply medicating observable symptoms. She’s a nephrologist; she called in an endocrinologist to help, and together they documented my genetic kidney deficiency. Now, I’m taking two medications for hypertension — after trying out 15 other medications prescribed by a string of 7 doctors, all of whom said my hypertension was “essential” — that is, of no known cause. They were wrong about that, and I let them be for far too long before starting my search for a physician who’d pursue a cure.

Hello @lookinup55, Welcome to Connect! I can see you already have a lot of good information from Colleen, Jamie and @predictable. I can relate to sitting at a desk all the time and having to “work” at trying to get any exercise in so it sounds like you have that part under control. I have some adversity for statins since I have peripheral neuropathy and statins will make it worse. I have often thought it might be helpful to have some genetic tests done to see what drugs could be used to treat a condition. Mayo has some good info on Pharmacogenomic testing at http://mayocl.in/1FygJlM.

A really good book which started me on my path to eating a more healthy diet was Wahls Protocol by Dr. Terry Wahls. She did a lot of research on MS which was what she has and was able to reverse some of the debilitating symptoms. Basically she went from being bound to a wheel chair to being able to ride a bike again. She provides some insight and explanations on how different foods affect autoimmune diseases. She also has some TED talks on YouTube that are pretty interesting. Here’s her story if you are interesting – http://terrywahls.com/about/about-terry-wahls/.

Keep asking questions and interacting with your doctor. You are your best advocate!

John

@lookinup55, Welcome to Connect. I see that you have already received some good information. I encourage you to do as John suggests, “Keep asking questions and interacting with your doctor.” I am over 55, and I did experience some real high cholesterol numbers when I was dealing with a liver/bile duct disease. My numbers were triple the normal range. My PCP had me taking meds for this; but my liver specialists said that ‘Of course I would have high cholesterol’ because of my liver disease. I read that you have had good liver function numbers; I did not. I share this only because I want to stress that with a rare condition, sometimes our wonderful PCP’s do not have the specific training needed to investigate this. Have you asked about a follow-up with a specialist?
I admire your proactive attitude. I hope that you will find some answers.
To finish my story, I did receive a liver/kidney transplant and my cholesterol numbers are back where they should be – sort of. It’s a constant effort to keep them close to the normal level.
Rosemary

If you have a thyroid problem, it may not show up in blood work. You can take a ton of cholesterol medicine and it won’t help if
your thyroid is not functioning properly. Some Dr. may want to give you a small dose of thyroid med. and see if your thyroid is not
functioning well. Another option is to see an Endoc. doc to use the scan where they rub a jell on the area and a monitor
gives them a good look at the thyroid. I went through a lot of medical test and none of them showed and ER visits,
finally an Endo. Dr. did a scan of my thyroid and found a 2.8cm noddle and half the thyroid was removed,
easy operation, but my Endo. doc told me “no amount of cholesterol med. will help if the thyroid is not functioning well”
This often is the case with cholesterol. The thing is I spent much time and money and ER visits. And an Endo doc finds
it in a gel scan in her office.

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